Friday, October 17, 2014

My Body, My Self

In Mel Brooks’ 1981 comedy “The History of the World, Part 1”, a scene set during the French Revolution features a member of the aristocracy rushing to tell King Louis XVI, “It is said that the people are revolting!” His Majesty quickly replies, “You said it, they stink on ice”.

The exchange is an amusing play on words that succinctly and humorously sums up the crux of the social upheaval engulfing France at the end of the 18th century. Substitute me for the King of France and the words “your body” for “the people”, and you’ll get a pretty good idea of what’s going on inside me, both physically and mentally, courtesy my creeping paralysis. My body is in full revolt, increasingly refusing to obey my commands, and I find the situation along with my withering body itself completely repellent. My body is revolting, and it stinks on ice (not literally, I hope, for the sake of those who get close enough to smell me).

The mind-body connection is a strong one, but progressive multiple sclerosis can be a buzz saw intent on breaking that bond. As the disease advances it forces one to separate body from mind, as the “self” becomes more and more divorced from the body that serves as its vessel. Despite lofty ideals about looking beyond the physical to the person within, our sense of self can’t help but be intricately entwined with our physical state; our identities, for better or worse, are in so many ways shaped by our outward appearance, a dynamic that seems ever on the increase in a culture obsessed with beauty.

We live in a society that idolizes physical beauty to the point of absurdity, elevating the utterly talentless but extraordinarily beautiful to fame and fortune and fueling in many an obsession with physical perfection. This incessant quest for beauty has in turn birthed entire industries devoted to indulging this ravenous appetite for youthful good looks which only further feed our insatiable societal lust for flawless appearance. Billions of dollars are made catering to a population infatuated by comeliness, with cosmetics, fad diets, exercise crazes, and plastic surgery all exploding to the sound of cash registers ringing and money changing hands.

Though we pay lip service to the idea that beauty is only skin deep, study after study has shown that in modern Western society those perceived as physically attractive have a quantifiable advantage over those not similarly blessed. There are, of course, exceptions to the rule, and beauty is by no means a sure ticket to happiness. Indeed, for some it can become a curse – think Marilyn Monroe – but our popular culture covertly and overtly continuously pounds home the message that the spoils of life most often go to those deemed gloriously pretty or handsome. I’m not sure that anyone can be immune to this pervasive zeitgeist, and I certainly was no exception back in my healthy days, although my relationship with my body even pre-MS had a long history of discord.

Growing up I was as skinny as they come. I’m not talking merely thin, I’m talking Boney Maroney, stick figure, almost comically scrawny. In addition to earning the nickname “Bones”, until I was 15 or so I was also quite short, and as a skinny little pipsqueak I was often subject to teasing not only by other kids but sometimes by adults as well. While it’s considered bad manners in grown-up circles to talk about a heavy person’s weight, it seems no such taboo exists when it comes to the extremely thin, regardless of their age. Being teased by other kids was bad enough, but in response I quickly developed a smart and scathing wit with which to defend myself from their juvenile barbs. Hurtful comments made by adults, though, always struck home hard, and I can still vividly remember some of the most boorish comments directed my way by adults who should have known better, the combined effects of which spawned massive insecurities that persist to this day.

A sudden growth spurt when I was about 15 years old took care of the pipsqueak part of my problem, but I remained superduper skinny for years to come. When I graduated college I was 6 feet tall and weighed in at a whopping 120 pounds soaking wet. Fortunately, sitting atop that emaciated frame was a face that was kind of cute, and much to my delight and amazement I discovered that there were women who actually like skinny men. I naturally gravitated towards artsy social circles and wound up the lead singer of a punk rock band, a role in which thin was most definitely in. In the underground music scene in the 1980s there was more than a touch of heroin addict chic, and I had the decided advantage of being as thin as a junkie without actually having to take drugs. I’d managed to find a social scene in which my being the skinniest guy around was actually an advantage. Go figure.

My body finally filled out in my late 20s, but I always remained on the thin side. Nobody was ever going to mistake me for Adonis. Although I was considered attractive, and was sometimes even called handsome, the insecurities that first took root when I was a skinny little nebbish lived on and I fought hard to overcome a shyness that at times bordered on social anxiety. I’ve been told that some found me aloof or even standoffish, but in reality I more often than not was quaking in my boots. That scrawny little 10-year-old was never far from the surface, a mind-body connection that persisted far into adulthood even though it no longer reflected my physical reality.

Now an entirely different kind of mind-body connection, or, more correctly, a mind-body disconnection plagues me. Just around the time that I had become comfortable in my own skin – thank you, decades of psychotherapy – a little problem called multiple sclerosis reared its ugly head. While walking my pooch along the Hudson 11 ½ years ago, I developed a slight limp in my right leg. All too soon that limp was joined by a weakening right arm, and whatever dastardly bastard was causing this distress refused to release its grip. Fast forward a decade plus and this beastly disease has just about fully consumed my right side and is gluttonously munching away at my left. My mind reels in horror at the damage that has already been done and can barely stand to contemplate that which may lie just beyond the horizon. But the me that existed before my illness struck still resides within, inevitably changed by the experience but ever yet struggling to maintain itself.

In a situation surreal but all too real, I find myself (and my self) trapped in a body that increasingly not only refuses to obey my wishes but seems to have a mind of its own. I sometimes put my disease to the test, concentrating intently, face contorted with effort, commanding my right ankle to flex, but much to my overwhelming chagrin and frustration, nothing ever happens. Absolutely nothing. Many nights, though, just about the time when I’m ready to go to sleep, my entire right leg will shudder and quake in muscle spasms beyond my control, violent enough to shake the bed frame, the tremors coming in waves every 30 seconds or so for hours on end despite the pharmaceutical cocktail meant to quell them. All the while, inside, buried deep within the emotional maelstrom brought on by my illness, lays a big kernel of the old me, observing it all in utter disbelief.

Since the onset of my disease, the divide between my essence and the body that contains it has grown from a slight fissure into a great chasm. I’ll occasionally struggle from my wheelchair to stand in front of a mirror, trying to strike a pose that suggests some semblance of normalcy, imagining that if someone were to glimpse me at that precise moment they might not guess I was so afflicted. But then I see in my reflection that my right arm has withered, the fingers on my emaciated right hand curl unnaturally inward, and my right wrist and elbow stay unbent only by my precariously lodging them against the side of my body. In shorts my legs reveal themselves to be sticks, as if they remembered who they were back in my skinny youth and decided to reprise the role. My once lean stomach has become a bulbous belly, courtesy years of sitting in a wheelchair. This is not the me that I hold in my mind’s eye, and yet this is the reality of the body I now possess, a body that will become only more and more unfamiliar with time barring some incredible medical intervention.

This decrepit circumstance has forced me to break the mind-body connection that we are so conditioned to accept as reality. Though I struggled to embrace my physical self in my younger days, I must reject the physical decay that now besets me, as for sure this defective mass of flesh and bone does not define me. My mind remains sharp, maybe too sharp, and my sense of self is more pronounced now than ever, albeit in an increasingly disembodied state. I don’t know if consciousness survives our ultimate physical demise, but I do know that the essence of who I am is increasingly independent of the physical form that maintains it.

In a strange paradox, I have become more sure of the person I am these days than I ever was back when my body was whole. I’m privy to insights I likely never would have attained if not for my unfortunate situation. It’s a strange life, this existence within an existence, but it is life nonetheless, not one I ever would have chosen but one in which holds within it not only sorrow and frustration but also still moments of contentment and sometimes even joy. Along with my sense of self those two most vital elements of life, joy and contentment, have by necessity undergone their own bits of revision, reshaped and reimagined by a me that more and more severs the connection between body and mind.

29 comments:

Love your wit dude, you write well. My friends have been calling me a curmudgeon since I was 40; I tell them I’m too young. Today, at 45 they may be right, but I am reluctant to give them the satisfaction. I was diagnosed with 2ndryPRRMS in April of 2012. It has been a long strange trip (Grateful Dead I think) to say the least. Thank you for posting. I am slightly computer illiterate and enjoy your rants and ruminations. Be well and enjoy.

Thanks for your generous comments. I firmly believe you are never too young to be a curmudgeon. I'm sure I was one even as a toddler. You're only young once, but you can be bitter forever.

It has indeed been a long strange trip, and you are right, that quote is attributed to The Grateful Dead. Was never a big fan of their music, but I will keep on truckin' as long as I'm able. Thanks again for contributing to my blog.

Judy, such praise from you is highly valued, as I know you are a person who chooses her words very carefully. Not sure about this being a masterpiece or a classic, though, just an honest attempt at summing up what's going on inside my head and body. It actually sucks that so many can relate. What a disease, and what a world to suffer it in. Happy happy joy joy…

A combination of aging (59) and MS in a youth-oriented and physical appearance orientated society with 22 year old boy-girl twins who both look great with attractive friends really is annoying!! Nice for them, not so much for me.

Kicker, despite my best efforts I can't help but look at all of the healthy youth in their dazzling splendor that populate my city with what can only be termed an unhealthy amount of envy. I want to roll up to them and scream that they should never take a moment of the majesty and glory of their youth for granted, that the problems that now can seem so overwhelming to them may one day very well become fond memories. If only I knew then what I know now…

Michelle, as you are another person who I know takes great care in crafting their words, I can only say thank you. Not sure such choice words are deserved, but I guess I should take them where I can get them… Thanks again…

Marc, you make me laugh, you make me smile and at times you make me uncomfortablehearing about your progression with MS.I will remember you from years gone by and remember how you once were and how youmade me laugh many times past. You were a great guy and now appear to be even a greaterguy.

Hey, anonymous, who the heck are you? Thanks for contributing to the blog, and for your kind words, but inquiring minds want to know. As for my being a great guy, well, not always, and I'm certainly no greater now, but perhaps a bit wiser. Glad we shared some laughs, though, whoever you are. Hopefully we will share some more…

A waste is a terrible thing to mind, or, as Dan Quayle once said, it's a terrible thing to lose one's mind, or to never have one (I believe he said this in front of a gathering of folks from the United Negro College Fund).

I am quite grateful for my relative smarts, but really, it would be nice to be able to shut them off sometimes. Thanks for your comments, much appreciated.

I am an MS patient too, and I have recently started blogging; mainly to vent. Your blog is such an inspiration to me. I'm sorry for your struggle, and I understand it. Thank you for being willing to share to freely. It provides such a service to all of us. :)

Meagan, thank you for your nice words, and welcome to the wonderful world of blogging. Vent away, it's good for you and other people may find it cathartic as well. A definite win-win.

So glad you like my essays, though I think some are put off by my determination to never varnish the truth of my situation. I think this blog may have become dangerous territory for MS beginners, and for that I'm sorry, but I'm just telling it like it is, at least in my little corner of the MS world. Sure would be nice if they would just cure this disease and we could all start blogs about more pleasant subjects, wouldn't it?

Like others have said, you hit the nail squarely on the head. I can so identify with your words, it could have been written about me. Right down to earning the nickname "Bones" as a child, and these days trying to balance on my feet long enough to strike a "normal" pose in front of a mirror, before collapsing back into my wheelchair. If I didn't know better I'd say you have a camera hidden in my house. After reading your blog, I am left breathless.

Hey, I thought I lost a camera somewhere along the way. Not sure how it wound up in your house, but if you wouldn't mind returning it, I'd be most appreciative.

Seriously, though, I'm so sorry that you can closely relate to my situation. It's always nice to know that there are others out there who "get it", so at least there's that. Hang in there, the only way out is through, one way or another…

Hey, when standing before the mirror, do you sometimes make funny faces that yourself? I sure hope I'm not the only one…

I rehearsed the mind-body disconnect back in my early thirties when i still believed I was 19 but the body said differently. Then throw in MS a decade or so later and it really does a number of my concept of self. All the practice didn't help... it still stinks!

As always, good reading! I love your way of describing how you feel about yourself (pre and post dx) and what the monster has done to you. So many times it is exactly how I feel! I first came across your blog shortly after I was diagnosed (2009) and I remember being so scared about what may lie ahead for me. As you are fond of saying, my progressive disease is going about its business progressing.

Though my fear of the future is still there, reading your blog comforts me somehow. Your ability to articulate so eloquently (sometimes quite comically) how this shit effects you, mind and body, makes me feel understood and not alone. I can still walk (if you can call it walking!) but it keeps getting harder. I totally get the skinny legs comment! As I sit a lot more than I stand/move, my poor posture and weak abdominals have caused my belly to distend. I always say that I've got more ass in the front than I do in the back! Gotta try and keep my sense of humor...

Thank you for being you and sharing yourself with me and everyone else who reads your words.Karen

Isn't it amazing what spending large amounts of time sitting on your backside can do for your physique? I always envied the Buddha for his enlightenment, but can't say I ever really yearned to emulate his body type. I'm afraid people are going to come over to me in my wheelchair and rub my belly to make a wish. Sigh…

It is of utmost importance to keep your sense of humor. Just concentrate on the absurdity of it all, better to laugh with the universe than have it laugh at you. As a friend of mine once said, when life hands you a lemon find somebody you hate and squirt them in the eye.

Very nice post and spot on comments. Seems the cognitive functions are still pretty strong all around. Not to throw a turd in the punch bowl, but have you heard of/looked into fecal transplants? Just came across the idea recently and was curious if you had thoughts on it.Thanks

I have indeed heard of fecal transplants, and even though the idea is high on the "yuck" factor, with all of the mounting evidence involving the gut/brain connection the approach does make some sense. I'm sure, like all things having to do with MS, what works for one patient will not work for another, but it's outside the box approaches like this that will eventually solve the MS riddle.

Marc, as usual you have completely nailed it. One of the reasons you have over EIGHT HUNDRED (panting with jealousy) readers is that you articulate what so many of us are experiencing. My body issue is the opposite of what yours was, but crushing nonetheless. I have found that a humiliating weight gain has been one of the more devastating losses I have been forced to endure. I have always been relatively philosophical about getting older, mostly because I thought I was aging rather gracefully. I was no beauty queen, but no one ran screaming from me in horror. But there is no escaping how hideous obesity is, how painful the loss of any semblance of being even moderately pretty anymore. It doesn't matter that I have gained weight because immobility and medications. The results are the same as though I stuffed my face round the clock. Then when I found out I had cancer, the sickest, most perverse part of me thought "Wow, I'll finally lose weight!" But no, of course not. It would just figure that I would develop what is classically a wasting disease but I myself do not waste. If anything, I've gained more due to the hormone regimen I am on to slow the cancer down. And I am on hormones because thanks to MS I have not been able to tolerate chemotherapy. What a vicious circle! What might have been a curable cancer is terminal The traditional treatment exacerbates the MS so badly that the MS, specifically the paralyzed diaphragm that it caused, prevents me from breathing.

I have to add, I have always thought you were particularly handsome. But your personality, sense of humor and your exceptional kindness are by far what makes you most attractive. Thank you for continuing to inspire us all with your wonderful, poignant essays.

Hi Marie, so sorry for the delayed response, no excuse other than my creeping paralysis, which is indeed still creeping. So, so sorry to hear of your cancer diagnosis, and all of the adverse effects associated with it. I know intellectually that there is no such thing as "fair" and "unfair", but emotionally I must say that what you are going through is definitely unfair. I used to like to believe in a just universe, but that's a belief that is getting harder and harder to sustain.

The divide between our bodies and the people we are just grows wider and wider as these illnesses take their toll on our physical selves. Not to be crass, but it can best be defined as a mind fuck. Oh, how I yearn for the blissful ignorance of my healthy days, when, unfortunately, I may have been ignorant but was far from blissful. Jackass. Guess it's true that we don't know what we have until it's gone…

Please take care, and thanks for your very kind words. Conjuring up tremendous amounts of good Mojo to send your way…

Today is the first time I have read your blog, since I also spend a great deal of time sitting, I have been thinking of starting a blog. I don't feel like fb is the right forum & I feel like many on there look at it as "gee, so sorry, sending good vibes & prayers" then in the next breath it's "hey, have you heard......." I'm not looking for sympathy, just some understanding. I was officially diagnosed 3 years ago, but I knew well before that, that something was not right. Seems like as soon as I found out I went downhill very quickly. Now I am walker reliant in my home but going out is now with a wheelchair or scooter. At first I tried to put up a brave front, but it is getting more difficult to stay positive. My husband doesn't really understand, says he does, but I know better. My mood swings are horrible & can change instantly, even though I take depression meds.

I have said all this to say I saw someone bring up the fecal transplant, I had it done in August of this year because my dr. thought it would really help, I was very hesitant to say the least, & sadly, I feel like I went thru all that I did for nothing. So far, in my case it is not working.

I will be following your blog, you have a ton of great material to read. Thanks so much for helping all of us stay up to speed!

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...